As if one’s not enough! My mother has Celiac disease. My father has diabetes. Both of these autoimmune diseases in one household seems like enough of a challenge, right? Imagine dealing with both autoimmune diseases yourself! My mom sent me this web article from Medtronic, a diabetic supply company that had recently posted this story in their newsletter. We thought it was important to share. Just goes to show you that you never know what cards you will be dealt in life. The important lesson here is that nothing in life is too big or problematic to handle when you stay positive and stay on track. Michael is a great example of that.
We originally ran this story in 2011, the first year of News to Infuse, and it was a popular story amongst our readers at that time. Three years later, we have many more readers, so we wanted to share Michael’s story again for our newer readers or those who may have missed it the first time around. Enjoy!
Michael DiFiore, who is living with type 1 diabetes and celiac, an autoimmune disease that affects the digestive system. According to the JDRF, he’s not alone: 1 in 10 people with type 1 diabetes also have celiac. (In the general population, approximately 1 in 100 people have celiac.) Thanks Michael for sharing your story and tips for others managing both conditions.
The year was 1989. I was 5. That year George H.W. Bush would become the 41st president, the Berlin wall would fall, the A’s would sweep the Giants in 4, cell phones were the size of bricks, and I would be diagnosed with Diabetes. Needless to say, this was a life altering event of epic proportions. As awful as this felt, in hindsight it wasn’t the worst thing to happen to me. No, the worst was also being diagnosed with Celiac only a year or two later.
Even back in those days, Diabetes was easy to diagnose. But Celiac, even today, often goes under the radar. Similar to my diabetes, my parents knew something was wrong with me. I was ravenously hungry and despite eating everything in sight I still looked like I was starving and malnourished.
Then the tests started. I felt like I was on the show medical mysteries with everything I had to go through. Other than the massive horse-pill that I had to take because they thought I was lactose intolerant, my favorite had to be the radioactive milkshake – yummy! Eventually a biopsy was done, and thanks to my completely smooth small intestine (which is not the way it is supposed to look), they realized the culprit. Today you can start with a simple blood test.
While I had it bad, I can’t even imagine what my parents were going through with first the Diabetes and then the Celiac diagnosis. I can’t even imagine what it was like for my mom to tell me, a seven year old boy, that I could no longer eat Lucky Charms if my blood sugar was low (thank goodness for Fruity Pebbles!). You see, Celiac is an autoimmune disease that affects the digestive system and causes the body to react to gluten, a protein found in all forms of wheat, rye and barley.
Today many of us take for granted the ability to go to a local grocery store and find a gluten free section or packaging marked gluten free, or allergy information at the bottom of a label. Back then, none of these conveniences existed. To get any specialized gluten free foods my parents either had to make it or mail-order it from across the country.
Of course eating out was another huge challenge in its own right. This reminds me of when we went to McDonald’s and ordered my burgers without a bun and the person working the drive-through asked my mom, “Is this for your dog? We have a woman that comes in and does the same thing for her dogs.” To which my mom responded, “Umm, no. This is for my son who is allergic to bread.”
Needless to say, just like with Diabetes, we’ve come a long way since those days. Still, having both Diabetes and Celiac is a total pain. But, if you’re celiabetic (what I like to call myself), here are a few tips from me to you about how to get through it.
1) Do right. I don’t think my life has ever been more difficult because I did the right thing. Of course there are those times of temptation – perhaps I didn’t give myself insulin as soon as I should have or I knowingly let some gluten slip into my diet. The effect of not doing right in these situations is not worth the high BG all day or night or side effects of the gluten.
2) Own your celiabetes, don’t let it own you. Life isn’t easy. In fact, life can be downright tough, ugly, cruel and unfair. We didn’t ask to have celiabetes, but that doesn’t mean we have to be victims. We are who we are and we have to make the best of what we have been given. Don’t give up.
3) Bad things happen, but keep a positive mental attitude, learn from your mistakes, and don’t look back. Enough said.
4) Live your life. Follow my lines of advice above and this will be easy. There’s no good reason having celiabetes should hold you back from living your dreams. For me, as much as I would like a cure for both diabetes and celiac (and be able to eat a big bowl of Lucky Charms whenever I wanted to again), I know things are getting better for both – from my insulin pump and CGM for my diabetes to the gluten-free section in grocery stores. I also know that they have both made me a better person, from growing up with responsibility to eating healthier foods.